Post by MPN-MATE Admin » Thu Nov 05, 2020 12:18 pm
Afternoon all...
I have touched on this Topic in the past, and I am aware that my late father did have Non Hodgkins Lymphoma (NHL), however, thus far I am the only one of my siblings who has been struck by any type of cancer. Nevertheless, this recent study has made some rather interesting observations concerning *Inherited* Cancer genes ...
The short You Tube is informative and the ful article is referenced below, as usual...
Thanks for sharing that. It brings up another question(or 300). If my MF was hereditary, and my brother was my donor, (he was) does that mean I might get it again? I will ask my doc about this when I see him again. I’m wondering if both my siblings should be tested, but what could be done for them other than monitoring? Btw, my sister's daughter has PV. Again thanks for sharing this fascinating info.
My understanding, (limited though it may be), would suggest that it would be highly unlikely after having successfully undergone an SCT. However, anything is possible I suppose... If your 'Donor' brother does not have a 'genetic mutation' then he might be clear... (?)
Nevertheless, running a few tests might prove harmless, while also helping to remove any anxiety on the subject of sibling genetic risk etc... (?)
Your doctor will provide your best answers I am sure...
Very interesting. Good to see that Mayo Clinic is leading the way to use genetic information to inform cancer treatment. It is highly relevant for me and my family. As you may recall, I have a JAK2+ PV. Was ET and "progressed." My daughter has a JAK2+ ET that looks like it is progressing to PV. My son has Idiopathic Erythrocytosis (JAK2 neg). My brother had a high grade Non-Hodgkin's B-Cell Lymphoma. All four of us have Neurofibromatosis Type 1. NF1 and JAK2 are both kinase-based diseases that increase the risk of neoplasms amongst other things.
Yes, I do recall we have covered some of these possibilities at an earlier juncture w/ you and your family... "Blind Freddy could see that... as they say..."
I believe making the NGS less cost prohibitive could prove to a most useful objective, and then perhaps we might all begin to see that there are many other genetic connections that are latent, and waiting to be uncovered.
Dollars, isn't always about the money... (?)
Stay safe buddy...
Steve
PS. BTW, Hunter, I am considering doing a ZOOM Cafe Catchup at a time that might suit the USA, (this time around), if you might care to join us mid-late November, just let me know, probably on a w/end etc (?)
I'll keep you Posted buddy... Naturally, I shall be interested in your Gene Panel findings too...
Back when I had mine tested, (circa 3 yrs ago), just CALR+ Type2 & ASXL1+
However, there are a couple of theories that more mutations simply appear as we age, and another that might suggest that Jakafi too might also be a contributing role in abnormal gene expressions(?)
Anyways, I shall let you know as we draw nearer the date etc.
Yes, it is quite interesting, and more so when most of the information out there, (provided by the medical fraternity), seems to suggest that MPNs are somatic in nature rather than inheritable etc.
Thank you for sharing! I'm convinced my mother and her mother may have had an mpn or something close. They both had numerous symptoms associated with MPN's and passed away with brain hemorrhages. Some close Male family members seem to have circulation issues.
Thanks for your response... This is not the first time I have raised a question about 'Inheritable Genes' etc.
On the last occasion, I believe that there was a sufficient response to suggest quite strongly, that there are many of us out there who have a parent who might have passed us one of these genes, and or other family members who also have an MPN... (?)
There were far too many here for it to be a simple coincidence, in my view...
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Hydroxyurea and skin cancer
GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!? 
Denied coverage on "Cancer" insurance policy
ET and colon cancer!
